Tuberous Sclerosis

Comprehensive Care for a Rare Disease

NewYork-Presbyterian/Columbia University Medical Center is home to a dedicated team of pediatric and adult healthcare professionals from multiple disciplines who collaborate to care for people with tuberous sclerosis complex (TSC), a genetic disorder which can affect multiple organs. People with TSC of all ages benefit from multidisciplinary care that includes medical treatment and surgery when needed, with specialists and subspecialists from all fields available in one location. Children and adolescents receive care for TSC at NewYork-Presbyterian/Morgan Stanley Children's Hospital, and adults are managed at NYP/Columbia. Our patients benefit from:

Recognition by the Tuberous Sclerosis Alliance: Based on our commitment to patients and families affected by TSC and our expertise in managing their care, NYP/Columbia was designated by the Tuberous Sclerosis Alliance as a Tuberous Sclerosis Center. With this recognition, the NewYork-Presbyterian/Columbia Tuberous Sclerosis Center has become a referral site for the Tuberous Sclerosis Alliance to direct patients for assessment, treatment, and follow-up care.

A Team Approach: Other medical problems that people with TSC may develop later in life may be missed at centers unfamiliar with the disorder. That's why evaluation at a medical center with expertise in the treatment of TSC, such as NYP/Columbia, is very important. We offer comprehensive TSC care from multiple specialists in one location, including neurologists, neurosurgeons, dermatologists, ophthalmologists, urologists, genetics experts, and kidney, heart, and lung specialists.

An Accurate Diagnosis: We're exceptionally skilled at identifying the signs and symptoms of TSC. The disorder is often detected at or before birth by the presence of heart lesions (rhabdomyomas) seen on ultrasound, which may signal the need for further evaluation. Parents have access to the expertise of prenatal specialists in the renowned Carmen and John Thain Center for Prenatal Pediatrics at NYP/Morgan Stanley Children's. Other people learn they have TSC later in life when they experience seizures and/or delays in development.

Personalized Treatment: The signs and symptoms of TSC may vary from one person to the next, with different organs affected at different times in someone's life. We assess the unique needs of each of our patients at each point in life to customize a plan of care. We monitor our patients regularly to see if their TSC has progressed to involve new organs. And because TSC is most often diagnosed early in life, we provide transitional care from childhood to adolescence and into adulthood to ensure seamless, high-quality treatment.

Leaders in Research: We have a strong research program aimed at increasing our understanding of TSC and developing more effective therapies. Our patients may have opportunities to participate in clinical trials of promising new approaches.